Authors: Lynne Segal
Jill [an old friend and lover of Constance] stayed to cook, for which Diana was grateful. She sat with her drink, listening to a violin concerto, while Constance gently rubbed her neck. To be cared for and cherished in this kind of domestic harmony was something that perhaps couldn’t be learned except in old age where the needs of the flesh, though humiliating, were rarely competitive. It was an accomplishment that came out of failure. (207)
Making an Exit
returns us to yet another compelling memoir of caring for a woman with Alzheimer’s. This time it is a daughter’s narrative, that of the New York academic and theatre critic Elinor Fuchs, who ends up mothering her mother Lil, through her final years with dementia. Lil was a once a vivacious, beautiful woman who, unusually for the 1930s, left an unhappy marriage to pursue an ambitious career, travelling the world and leaving her only child, Elinor, to be raised by her grandparents until adolescence. Half a century later, both mother and daughter are transformed by Lil’s rapidly increasing dependence.
With humour, anguish, insight and empathy, Fuchs recounts the new love flowering between them, perhaps for the very first time, as she learns to respond to her mother’s playfulness (as well as to her fears and tantrums), decoding the poetry and meanings in her mother’s disintegrating thoughts:
The more reduced you are, the more loving you are, everything else washed away – success, money, glamour, clothes, ‘things’. ‘My love!’, you say, ‘the one I love’ … I’m sitting here weeping and weeping for you and for myself. Oh, little lamb! It hardly matters now which of us is the mother and which the daughter. Taking care of as good as being taken care of. My job, to keep the little flame alive for just a while, to keep the little spirit in the world.
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As she readily acknowledges, it was important, of course, that Fuchs had relatives, especially a loving uncle, as well as money and resources for helping her with the task. This memoir joins the previous narratives in seeing the mother’s deterioration not merely as a period of loss, but as a type of spiritual rebirth, as the daughter learns the skills of connecting with her mother’s daily life: ‘I call her “Little Bones” and sit her on my lap. “I love you,” she purrs. I talk comforting baby talk. “Little pussycat, my little pussycat.” ’ ‘The last ten years: they were our best’, she writes, as she ends her memoir.
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Another thoughtful and extremely informative memoir on the shifting feelings of love and commitment towards a parent with Alzheimer’s is a daughter’s reflections on her complicated relations with the suffering of a father. In
Do You Remember Me?: A Father, a Daughter and a Search for Self
, the American writer Judith Levine explains that she had always been, at best,
a ‘reluctant daughter’, spending much of her young adulthood as a feminist at war with her overbearing father, while also rejecting any form of traditional family life.
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Now, however, as she watches the cognitive deterioration accompanying Stan’s Alzheimer’s disease, she finds herself ‘warily beginning to love’ him again, even to enjoy his company in unexpected ways. His mind wanders but his senses remain intact, sometimes returning him to some of his earliest pleasures. Father and daughter have fun visiting galleries together, or when he starts drawing with crayons: ‘When I’m with him, I enjoy a kind of contact dementia. The rational world snookered, I respond directly to colors, shapes, and images, the irrational reason of the contemporary visual’, she writes (89). They listen to his favourite music together, and he gets up to dance with her, a slow and serious waltz. The father’s inability to hold a rational conversation distances him from his wife, her mother, who is with him all the time until she eventually leaves him, though continuing to arrange for his support. But strangely it allows the visiting daughter to draw closer to him.
As Fuchs found with her mother’s cognitive breakdown, Stan wants to communicate, he attempts to make conversation, though his wife can barely listen. So he chats to strangers he hopes might prove friendly, and sometimes they are. Despite his cognitive fragilities, when he feels relaxed with people, Stan animatedly repeats old phrases from the past, and his daughter listens: ‘ “I’m saying to myself, Jesus Christ!” a playful look on his face, then he chuckles and shrugs just like before, or he’ll say, “how are we going, I’m asking myself. You have to ask yourself”; when anxious he might yell, in ways that are easily meaningful, “I have no boat, I have no money” ’ (161). He becomes aggressive with some people, but he is good-natured
with those who treat him kindly and gently. He is kind and courteous with the person who becomes his paid carer, Nilda, who barely speaks any English. They sit together watching television, holding hands contentedly, as she brings out Stan’s best self: ‘Dad now has more room to express his graciousness, his yearning to be liked, and his pleasure in the pleasure of others’ (310).
What seems obvious to Levine is that the medical standardization of dementia care misses all that is creative and important in offering good treatment. So much money goes into finding a ‘cure’ and so little time and effort into providing the best care for those who suffer from dementia, she writes. Levine looks at the research of the American neurologist David Rothschild, half a century ago, or the more recent work of the late British-based psychologist Tom Kitwood, who both stressed that the type of care a sufferer receives makes so much difference to the outcome of dementia, making it a social as well as a biological disease. There are ways of shoring up the personhood of the dementia sufferer, and ways of smashing it faster.
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What is evident from various studies is that at any stage of cognitive deterioration, good quality provision leads to emotional improvement and can even impede cognitive decline.
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Nevertheless, tales of caring for others with dementia in late life are not often so redemptive as those told by Fuchs and Levine, neither of whom had to shoulder the burden of care on their own. The majority of those afflicted with what is currently the most feared of all diseases will end up in care homes, when assisting them at home is no longer possible. Life may look like, and indeed it may become, a disaster for other carers of older people with dementia. In her prize-winning memoir,
Keeper
, Andrea Gillies describes the impossible toll on her
and her family in a harrowing tale of trying to look after her mother-in-law, Nancy, after making what turned out to be the devastating decision to move to a beautiful retreat in the far north of Scotland. Instead of Nancy being moved by the beauty of the landscape (when her memory and language kept failing), as Gillies had hoped, Nancy became increasingly unmanageable. She was unhappy, angry and afraid, hostile especially towards Gillies herself as she tried to care for her: ‘Nancy’s ranting about me to helpers and carers has become ubiquitous and vicious’, with Nancy accusing her daughter-in-law of stealing from her, hitting her, and worse.
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Gillies, like Levine, makes ample use of her medical researches into the disease. However, in the end no amount of knowledge can enable her to keep on loving someone who seems to hate her and, perhaps, she comes to feel, has always secretly hated her. Before she finally gives up, admitting to herself she’s tired of dealing with everything to do with Nancy, she feels herself to be a failure, suffering from what she later discovers is called ‘caregivers’ dementia’, becoming herself intolerant, badtempered and demanding. It is a painful narrative, and relief comes only when Nancy is safely in a nursing home, though Gillies, now engaged in speaking out to improve conditions in care homes, ends her book: ‘As for me, I’ve arrived, already, at a state of self-protective forgetting. People are good at that, at moving on, dwindling the past into a story we tell ourselves, into parables, and choosing the future over the past.’
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Alongside those who experience forms of love, significance, distress or pain – rarely free from ambivalence – caring for the frail elderly, there are many situations that afterwards leave the survivor cherishing memories they wish only to preserve and to share. In another tender memoir,
Endnotes
, Ruth Ray describes
falling in love, at forty-two, with Paul, a man of eighty-two, with Parkinson’s disease, living in a care home.
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Already a creative writing teacher, but in training to be the gerontologist she will become, Ray is giving classes to the residents of the care home where Paul lives, encouraging them all to narrate their lives. The first thing she notes about this open, insightful and engaging man, Paul, is his sensuous, witty prose and gentle, humorous ways as, for instance, he looks down, ruefully, ordering his uncooperative feet to move, or arrives late to class, with toilet paper stuck to his neck, apologizing softly: ‘Someone volunteered to cut my throat, and it took a while’ (22).
To her own surprise, Ray sees nothing disturbing in Paul’s extreme frailty, or when he starts to express his admiration and affection for her. However, already a divorced woman, with suitors of her own age, she was not, she says, looking for love. Yet when Paul takes her hand to declare his love, she finds herself returning it, replying at once, ‘I love you too’, kissing him back when he kisses her (26). Ray’s memoir of their love affair, which took her ten years to complete, covers the period until Paul’s sudden death, with the couple seeing each other or telephoning almost every day.
In ways that are challenging to the reader, but not to Ray herself, she writes of their delight in each other, even as she candidly reveals his many impairments, including his shakes, memory loss, incontinence, difficulties in walking, and more. Together they confront all the pleasure and problems of their sex life, the difficulties of planning for the future and the limitations of nursing homes. They speak to each other of the closeness of Paul’s death, as Ray tells Paul he will be ‘watching over her’ after his death, from wherever he is: ‘Paul sighs contentedly. “That was a true lover’s speech” ’ (129). So this is
a love story about living apart, together, as some describe that alternative form of intimacy today, giving Ray a very special platform for addressing the constraints of nursing homes and offering her own practical suggestions for improvements to make nurses and other carers more attentive to residents’ needs for autonomy and choice, as well as for privacy and the recognition of diverse sexualities.
Reviewing this memoir, Margaret Gullette notes, ‘in fiction this would scarcely be credible; on film, [Paul] would have to be tall with a full head of hair and no perceptible shaking’.
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When Ray, who became a friend of Gullette’s, had first told her about Paul years earlier, she confessed to her new friend: ‘his was “the best loving” she’d ever had’. Gullette is not slow to draw the lessons of this moving narrative, noting how Ray is able to present Paul as lovable, despite a much feared impairment: ‘As a result of making a man with Parkinson’s lovable’, Gullette concludes, ‘Ruth Ray can show where value lies inside later life – in unsuspected places. Lovingly, she shows us how to write touchingly about – and quote as often as possible – people with disabilities who also happen to be old.’ As ever, Gullette emphasizes that ageing and disability, let alone such a debilitating one as Parkinson’s, are far from the same, even though we confront social anxieties that tend to equate them. Rightly, if perhaps somewhat optimistically, Gullette suggests that books such as Ray’s might help us to withstand such cultural horror of old age, drawing us closer to all older people, whatever their fate: ‘Having empathetically read
Endnotes
, now I can imagine not only being Ruth but being Paul, and even thinking, as Paul does, “How lucky I am.” ’
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Our luck, or misfortune, after we first confront the ‘stranger’ who begins to look back at us from our middle years is hardly
predictable. Of course, material privileges or deprivations will be accentuated as we age, cushioning or worsening our fate, as will our embeddedness or lack of it in supportive communities, and not just inside conventional families. Nevertheless, neither the sociology nor the biology of ageing is the chief concern of this book. It is rather the stories we tell ourselves given the strange or bewildering predicament of not really knowing how to
be
our age, as we age. The confusion remains, even when we attempt, usually belatedly, to tackle the noxious flow of prejudice and inner fears most of us face in old age. Illness and disability will age some people prematurely, leaving them to face the process of dying when still young relative to the average life span of their time and place. Even so, the psychic resources we can call upon are rarely predictable, though we can learn much just by listening to the account others give of the process.
The late, influential American literary scholar, Eve Sedgwick, wrote of finding new resources for living with illness, confronting mortality and appreciating the joys of daily survival after getting breast cancer at the age of forty. This was first evident in the book she wrote soon after learning about her cancer,
A Dialogue on Love
, with its medley of poetry and prose, providing an extraordinary account of the healing therapy she began months after her diagnosis. Her therapist, Shannon, was a man who shared little of her intellectual passion but with whom she felt able to share her fear that in facing mortality she might stop knowing how to like and desire the world around her.
The opposite happened. As the therapy proceeded and Sedgwick recorded the ways in which the ties between patient and therapist deepened, she wrote again and again of the ‘sheer pleasure’ she gained reviewing all the most difficult, grubby episodes of her life and the loneliness and isolation of her
childhood as ‘a dorkily fat, boneless middle-child’, with this attentive witness to accompany her – an observer who gave her access to his own case notes. For instance, recounting her complicated, sadomasochistic fantasies with ‘sheepish pride’ in therapy, she writes: ‘Somehow Shannon develops a way of listening to fantasy that leaves me feeling I’ve revisited it accompanied by a friend.’ In what quickly became itself a type of healing love relationship, Sedgwick struggled to find words for her new attachment to life: ‘I don’t know how to put it. But there’s some circular reciprocity between these holding relations: your ability to hold me inside you, and mine to hold you inside me.’
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During the therapy, Sedgwick also discovered two other sources of joy: the pleasure she gained from texture, in the craft of weaving, and from the practice of Buddhism, immersing herself in
The Tibetan Book of the Dead
.